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A lupus moment - letting the tears come (and go) as needed.

Some days with lupus just seem tougher than others: mornings that seem to last a lifetime, hours that never end. Minutes that seem more unbearable with each second that goes by. And instances where you simple can't take it any longer.

Two weeks ago, I had one of those moments.

We were driving home from my doctor's appointment, having received the fabulous news that my swollen lymph nodes were nothing to be alarmed about. Johnny was driving, because for some reason, my prednisone from the night before and the morning of hadn't kicked in yet, and my joints were aching (not agonizing pain, but definitely present.) We'd decided to run two errands on the way home - as if we were making the enjoyment of finding out that I didn't have a tumor, cancer, or lymphoma last as long as possible.

First stop was coffee for Johnny and me, and a muffin for Bernadette. (Dee was in school.) Normally, Johnny would have pulled up to the coffee shop, and I could have jumped out, grabbed the goodies, and hopped back in the car. But there was no hopping anywhere for me today, given my joint pain. So Johnny happily parked, ran in, and returned in no time with our stuff.

Errand number two was to drop off something at the printer for his business. Again, normally he'd pull up to the print shop, I'd hop out, and be back in a flash. But not today. He parked without a second thought, and we watched him run in to drop off the stuff. While Bee and I were waiting in the car, a woman about my age started to cross the street in front of us. Another car was pulling out, so she quickly picked up speed and jogged across the street, in skirt and heels, to the other side. It caught my attention, because her face showed no pain or strain at all. She wasn't wincing, nor struggling in any way. And I thought about how pain-stricken my face would look today if I'd jogged the few steps she'd just traveled. Yesterday, I'd run a mile and a half on the treadmill. Today, taking a few steps would have felt like death.

Johnny returned to the car, and as I sipped my coffee, I found myself not being able to handle it, for even one more moment. I was just sad. I was sad to be in pain. I was sad to not be able to move freely. I was sad about having lupus. And the tears began to well up.

As the tears fell quietly and unbeknownst to my family, I reached out and put my hand on Johnny's. I was immediately reminded of his loving care and gentle touch. I heard Bernadette's sweet little voice in the background, as she serenaded us with "Let it Go" as only a three-year-old can. I thought about the good news of my lymph node biopsy, the promising effects of my cellcept, and the love and support of my family. And just as quickly as the moment of unbearableness had come on, it left. My eyes dried, and feelings of resiliency and strength returned.

I concluded that it's vulnerable, heart-wrenching, tearful instances like these that allow me to realize that life with lupus is going to be okay. That the good moments truly do outweigh the bad. And that the worst ones only make way for the better.

Sarah, I really feel for you in this post. I think it's interesting what can set us off, and I can see why that woman looking so effortless did. Sometimes reality hits us in the face. And I am so glad that the swollen lymph nodes were nothing to worry about!

I totally understand why you got emotional. The thing about living with Lupus is that it really forces us to see the beauty and good in even the smallest moments. I get sad too sometimes, and have to stop and reflect on everything I have to be thankful for. Thank you for sharing and for your honesty. I really appreciate your blog.

Yup, we've all had those moments. I was offered a pretty decent job a few weeks ago, but had to turn it down. Working plus studying for my masters, planning a wedding, exercising, and staying well wasn't going to work out. Tough decision, it may really hamper my chances later on, but it was one that reminded me that lupus is still there even though I'm in remission.

And, on another note, here's to the wonderful men who support us during all of this! They really are incredible.

Only just found your blog and love it already!You could be describing me in this post.... down to a tee. I've gone from being main caregiver to my husband who has a rare brain cdtn and all round superwoman to the family.. to someone who feels like crying every single day. Joint pain and stiffness, agony to walk and struggling with everything. I've had flu since the beginning of January and cannot shake it off and I'm waiting to be seen at the hospital. My family Dr suspects lupus as do myself and my family.

Your blog helped me so much today.. thank you so much! I'll be reading it from now on...you're so inspirational. :)

Sara, thank you for this post. Currently I've been diagnosed with Fibro and RA, but I go in today for blood tests to see if I have Lupus. Since November I've been struggling to get by from day to day, dealing with stiffness, pain, rashes, and fatigue. Some days I just feel weary. Some days I want to cry, but press on. And some days I cry. Today, I'm hurting, but my mood is good. I'm feeling positive and proactive today. That may change at any moment, but for now I'm feeling positive, and your blog helped with that.

I've been reading almost all your blog posts. As others have posted, I see myself in many of your posts. How come I could see that you were doing an awful lot & worry for you, & I don't see the same thing when I am doing it? Have you considered that the lighting in your newly constructed home, is contributing to your long flare up? We purchased a condo out of state. Every time we went there, between the flight & the condo, I had a flare. It seems the energy efficient lights we now have to use, give off more UVA & UVB than the old bulbs. We bought a place that had only halogen bulbs for every light in every room. We bought filters for the bulbs & now I don't have a flare because of my own home. Thank you for your blog. It helps so much!

Oh these comments! U all make me feel so normal!!! Thank you- and thanks to everyone for their honesty!

And squeaky- thanks for the tip on the lights. I'll look into it, as there may be something there. We were pretty selective, but something may have snuck through. And what u said about seeing where I was going astray but not yourself...that is SO true! I can't tell u how many times I've worked through a lupus dilemma with a reader, only to realize that the solution we came up with is totally applicable to myself. It's the ultimate "help yourself by helping others." Choices become crystal clear when they're posed to someone else, right? Thx!

I just read your post and it brought a tear to my eye. I am 39 year old mum of 2 young children (2 & 5 yrs). I am waiting for a hip replacement as a result of avascular necrosis which is caused by lupus or arthritis or use of steroids (prednisone) all have been part of my life. I know that sad feeling when you see people doing things that you should be able to do, walking your child to their classroom but you can't because it hurts too much. Thank you for sharing, I am not alone.

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Sara Gorman was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life, and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus.
Her book, "Despite Lupus: How to Live Well with a Chronic Illness", details the steps it took to reach that goal.
In 2012, Sara also launched Sara Gorman’s Pillbags – a line of fun, fashionable pill organizers. The stylish, fabric pillbags can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com.
A native of Indiana and graduate of the University of Notre Dame, Sara resides in Northern Virginia with her husband and two young daughters.